When Elisabeth Anderson-Sierra was pregnant with her first child, her breasts began leaking at around 12 to 14 weeks. Since it was her first pregnancy, she chalked it up to hormones, figuring this was just another weird thing a body does when growing a baby.
The leaking not only persisted, but increased. Her midwives reassured her that leaking is normal. When she complained of discomfort, they recommended she use a hand pump to relieve the pressure.
By the time she reached the halfway mark in her pregnancy (20 weeks), she was pumping and storing 20-30 ounces per day — enough to exclusively feed an infant. When she explained the situation to her medical providers, “they thought I meant milliliters,” Anderson-Sierra told HuffPost.
It wasn’t until one of her midwives came to her home for a post-birth checkup that they realized how much milk she had been “leaking.” When the midwife asked how breastfeeding was going, Anderson-Sierra proudly showed her the full freezer. Then she showed her the extra freezer out in the garage, also filled with bags of her frozen milk.
Anderson-Sierra was referred to specialists and checked for conditions that can influence milk production, such as a tumor in the pituitary gland. Her pituitary gland was enlarged, and her prolactin (a hormone necessary for milk production) was high, but no other causes of her condition or threats to her health were found. The diagnosis? Hyperlactation syndrome, which means exactly what the name suggests: She was simply producing an unbelievable amount of milk.
Doctors told her that after a few months, her pituitary gland would likely shrink back down to its normal size and her milk production would regulate.
Nine years later, Anderson-Sierra is a mother of three ― an 8-year-old, a 6-year-old and a 9-month-old ― and holds the world record for the largest donation of breast milk by an individual. She has been producing milk continuously this entire time, simply by pumping as often as she needs to to relieve her discomfort. In addition to nursing her baby, Anderson-Sierra pumps five times a day. She uses a portable, hands-free pump that allows her to express milk while going about her daily activities.
“I haven’t gotten a day off since I was pregnant with my first,” she said.
This unforeseeable turn of events has turned Anderson-Sierra into a bit of a celebrity. She is an advocate for milk donation, as well as a spokesperson for the pump she uses.
A frequent blood donor before she became pregnant, Anderson-Sierra was happy to oblige when her midwifery clinic suggested she could donate some of her milk for new moms who needed to supplement. She is proud of the thousands of ounces she has donated to a milk bank serving primarily premature infants (whose birthing parents often have a difficult time producing milk, and who are particularly vulnerable to an intestinal infection that a breast milk diet can help prevent).
But her condition is exceedingly rare, and is accompanied by significant downsides. In addition to the incessant discomfort and the need to pump, Anderson-Sierra believes her high prolactin levels may have led to the several miscarriages she’s experienced. (Some research shows there can be a link between the two.) She’s also had multiple bouts of mastitis, a painful infection of the breast tissue, and at one point was hospitalized for it.
Where holistic remedies are concerned, Anderson-Sierra has done “every single thing under the sun that you can typically do to dry up supply.” She has tried taking medications that can be used off-label as prolactin blockers, but she stopped due to side effects like severe headaches, heart palpitations and tremors. More recently, she and her doctors have discussed performing a mastectomy to remove the breast where she has had recurring mastitis.
While the experience has been a burden in many ways, Anderson-Sierra says it’s been “humbling” to be able to donate milk. She has found it especially meaningful to give her milk to local families and build relationships with them. “Some of our kids have grown up together,” she said.
Parents help other parents in informal milk sharing arrangements.
At the other end of the spectrum are parents who struggle to produce enough milk to feed their babies. Breastfeeding advocates are quick to note that while many people worry about having low milk supply, few of them actually have it. (There isn’t a lot of data, but some studies suggest 10% to 15% of lactating parents are affected.)
There are a number of reasons a person might experience insufficient milk supply ― some more treatable than others. When an infant needs some extra nutrition for a few days or weeks while a parent builds up their supply, or on a more permanent basis, they are usually fed infant formula, which is clean, safe and (usually) readily available.
But in recent years, social media has expanded the prevalence of informal milk sharing arrangements, like the ones Anderson-Sierra had with her midwifery clinic and local families. Facebook groups such as Human Milk 4 Human Babies facilitate these relationships. A person who’s looking for milk or has milk to donate can post in the group to find a donor or donee. (Selling milk is prohibited by these groups, but it does sometimes occur in other online forums.)
A typical donor is someone who has accumulated a modest stash of breast milk in their home freezer that they don’t foresee their own baby using, and they’d prefer to give it to someone who needs it, rather than throwing away something they worked so hard to collect.
Informal milk-sharing arrangements can take place online, but they also come into being organically when one parent reaches out to help another.
This was the case for Amanda Freeman, who used donor milk to some extent to feed each of her three children. Her first baby was given donor milk in the hospital. Freeman told HuffPost she was “sent home with instructions to supplement with formula, but I didn’t want to do that. I was crying about this to a work associate and she offered me the milk in her freezer.”
“Then she told me about human milk sharing,” Freeman said. “I found a donor on Facebook and she was local to me and donated milk to my baby and several others for the next nine months.”
Joanna Gagne, a mom in Ohio, was led to donor milk by her midwife. When her son struggled to gain weight early on, Gagne tried pumping, taking supplements and eating foods known to boost milk supply, but nothing worked.
She personally wanted another option aside from supplementing with formula.
“My midwife knew my concerns and reached out to some ladies who had birthed around the same time I did,” Gagne told HuffPost.
Just hours after first discussing the possibility of donor milk with her midwife, “I cried with relief while I gave my son his first bottle of donor milk,” Gagne said. ’I knew he would be OK, and that our breastfeeding efforts were not over.”
Gagne’s baby received milk from four different moms over the next several months.
“It gave me a whole new outlook on the phrase ‘It takes a village to raise a child,’” she said. “I’m so grateful to these women who spent hours pumping while caring for their own babies so that my son could benefit from their milk.”
Parents who adopt or use surrogates also sometimes look for donor milk to feed their babies.
There are some challenges to hunting down donor milk for your child when you’re doing so informally (not purchasing milk from a milk bank). Demand is generally much greater than supply, so finding a donor in the first place can be tricky. You also need to be comfortable with a certain level of risk, taking donors at their word when you discuss things like the age of the milk and any medications they take.
Because breast milk can transmit viruses, and milk collection and storage introduce the possibility of bacterial contamination, the American Academy of Pediatrics does not recommend the use of milk procured via informal milk sharing.
But for some families, the benefits of donor milk outweigh these challenges and risks.
Rosalie Kmiec is a mother of three. Her youngest child, Goldie, was born with a heart condition and required surgery early on for a gastrointestinal issue.
“The fancy German formula that I spent so much time researching caused her gas and discomfort. She cried and struggled to finish bottles. My husband encouraged me to seek out donors and now she is thriving,” Kmiec told HuffPost. “She is growing so quickly that her doctors think she is big enough to get her open heart surgery repair next month.”
“Without donor milk I’m not sure that she would be thriving and gaining so well due to her GI condition,” she added. “Goldie just turned 3 months old, and I hope to keep her on donor milk for as long as possible.”
Milk banks collect donor milk and prepare it for use by preterm infants.
Donations to milk banks typically involve more restrictions. The milk is pasteurized and tends to be given via doctor’s prescription to premature infants residing in hospital NICUs, although it can also be purchased by individual families.
There are 32 milk banks that are members of the Human Milk Banking Association of North America. Mother’s Milk Bank in California is one of them. The bank accepts donations that consist of at least 100 ounces of milk “up to 6 months from the day of expression,” according to their website. They have sent milk to 80% of the NICUs in California, as well as others out of state.
Donors working with Mother’s Milk Bank complete a screening questionnaire, share information about their health history and lifestyle and submit to blood testing. All fees for bloodwork and shipping costs are covered by the milk bank.
Mya Morenzoni’s daughter, Aria, received a milk fortifier, a nutritional supplement providing extra calories, during her NICU stay after her birth at 27 weeks. Morenzoni felt lucky to be able to produce colostrum, or early breast milk, to give her daughter while she stayed in the NICU. She was also grateful for the availability of a milk fortifier made from donor milk. (Other fortifiers use a cow’s milk base, like infant formula is made from.)
“As a nurse I knew a lot about breast milk and its benefits and so I was glad that I was able to get her that, but then I knew that with her coming so much earlier, of course, being an incubator and all of those factors, she needed additional calories, and so I was really glad that she was able to have the fortifier,” Morenzoni told HuffPost.
She’s grateful to the women who donated the milk that was made into the fortifier her daughter received.
“We especially appreciate the moms that have extra and are willing to share. It’s just a special superpower that they have,” she said, calling milk donation “one gift that literally keeps on giving and benefiting so many other lives.”
How to find donor milk if you’re in need.
If your baby was born preterm and is in the NICU, or has another medical condition, speak to your doctor about the possibility of receiving donor milk from a milk bank. They may be able to write a prescription for the milk.
You can find a milk bank in the directory of the Human Milk Banking Association of North America.
If you have a healthy, full-term baby for whom you wish to purchase donor milk from a milk bank, contact the bank directly. Some banks will limit the amount of milk you can purchase without a prescription, or not allow any purchase without one. At the Mother’s Milk Bank in California, the limit is 40 ounces. The Northwest Mothers Milk Bank does not allow anyone to purchase milk without a prescription. The New York Milk Bank sells donor milk to families for $4.90 an ounce, to offset the costs of processing and preparing the milk. Note that HMBANA milk banks are nonprofits, and donors are not paid for their milk.
If you are looking for donor milk via an informal arrangement, you might start by asking local midwives or posting a request on local parent groups. You can find local milk sharing groups via Human Milk 4 Human Babies.
In 2017, the Academy of Breastfeeding Medicine published a paper suggesting guidelines for screening potential milk donors for healthy, full-term infants via informal milk sharing. They suggest that donors:
- be in good health
- be only on medications compatible with breastfeeding
- test negative for HIV, hepatitis B, and HTLV-1 (in high-prevalence areas)
- not be at risk for HIV, or have had a partner at risk for HIV in the previous year
- not smoke
- not use marijuana or illegal drugs
- drink no more than approximately one alcoholic beverage per day (they suggest the following as limits: 1.5 ounces of hard liquor/spirits, 12 ounces of beer, 5 ounces of wine, or 10 ounces of wine coolers)
The paper discourages purchasing human milk or accepting anonymous donations.
In addition, you will want to know when the milk was pumped and how it has been stored. The Centers for Disease Control and Prevention says that “within 6 months is best, up to 12 months is acceptable.”